Recovery not as quick as I thought

[amn70]

Hello,

I am looking to those that know best for support and encouragement. I was diagnosed with an 8 mm AN in June 2001. I had FSR at Johns Hopkins in Oct. 2001 to treat this small AN and unfortunately, the AN grew to be 1.5 cm and I recently (Jan. 2005) had ito have it surgically removed (translab approach). I am 34 and prior to the surgery was VERY physically active (runner for four years and training for a half marathon before my surgery). I thought I would be bouncing back much faster than I have been. I thought my age, great mental attitude prior to the surgery, good health (sans the tumor) and a very active lifestyle would accelerate my recovery but it has not. I am still very lethargic, in a good deal of pain still and very depressed that I do not feel anywhere near where I did prior to my surgery. I know each person is different in terms of how we heal and recover but any suggestions, especially from those who led a VERY active lifestyle prior to surgery and who have been trying to get back into a workout routine, would be greatly appreciated. Thank you.

amn

[GM]

Amn,

Although I am not a surgery patient, I can relate to how you feel.  I had a Gamma Knife treatment in November of 2003, my tumor has grown from 1.8cm to 2.1cm.  I just had my recent MRI and I have to wait until next month for my results!  I am 43 and am very active... I run, exercise, enjoy the outdoors, and basically push myself all of the time.

But I can tell you that you are special.  You faced a major trama in your life, decided on how you were going to treat it.  We all get down sometimes from tinitus, imbalance problems, radiation setbacks, or even surgery....we are all in this together!  Unfortunately, the people that have had the least bit of trouble have moved on with their lives and no longer visit support sites like this so we cannot learn more from them.

But the good news is that we have each other...it doesn't matter if we are raidiation types (zappers), or watch and wait, or surgery....we all have AN's and still deal with them.  The worry of will I have to treat this again...will I get to keep the hearing I have...or whencan I get my life back to normal.  We will keep you in our prayers, and please keep us in yours.  You will get back to your life soon...because I'm sure that you will except no less!  Smile, we're here for you.   

Gary

[amn70]

Gary,

Thank you for your encouragement. I will keep you in my prayers as you await your next MRI results. You, too sound very positive and I hope you will continue taking care of yourself physically and mentally--it will most certainly help with what may lay ahead for you. Despite the fatigue, the hearing loss (I lost my hearing with the type of sugical approach I had), the tinnitus, the balance issues, the headaches, the dry eye and partial facial paralysis that I am experiencing, I am grateful the surgery was a success and I able to still enjoy life. The recovery period is in my hands now. Keep in touch and please let me know how you fare with your next MRI.

All the best,
Angela

[GM]

Here's a vertial hug for ya Angela {HUG}    This is the time to be close to family, friends, or significant others....   May I suggest starting a journal (or diary), I find it's a great place to let go of thoughts, or feelings/frustrations.    When you get better, it will be a great source to reflect. 

Also here is a link to check out:  http://groups.yahoo.com/search?query=acoustic+neuroma
these are groups in Yahoo (you may have to register with Yahoo first), but there are many more support sites there as well.

Gary

[amn70]

Good suggestions, Gary. Luckily, I have been journaling for over 25 years so that has been a bit helpful in this recovery process. Although I have a great support system with my friends and family, I thought this message board would be a good supplementary outlet in seeking tangible solutions or suggestions to the situations I am facing from others that can relate to what I am going through. A lot of people on this site seem to be at varying stages of acceptance with their recovery and I am trying to touch base with others who are perhaps at the same place as I am and ready to move forward to tackle the challenges of living life post-op. Maybe someone can help me move further ahead and I them.

[dpetty]

Well I too was very active and healthy before my surgery (8 cm x 4cm,very aggressive) and it took me 18 months to really get over the weakness. You should remember that your brain has been traumatized and feeling  lethargic and depressed is normal, it will pass in time (6 months for me). As far as the pain goes I suffered with terrible neck pain for 2 yrs but I got in the gym and worked out everyday and it has done wonders for me, about the only time I have pain is if I am under a vehicle working on it.

[amn70]

I need to follow your lead and get back to strength training to help out my stiff neck, too. How long did it take you before you were able to do consistent strength training? I am finding that just being back at work 25 hours a week is pretty much zapping all my energy. I did some strength work during my month of requested physical therapy but that was while I was still on medical leave from work.

[dpetty]

Oh it was a full year or better before I was back to the same level of energy,  but I tend to be driven and I was really pushing hard due to a divorce,work and fighting to keep the kids with me. When I could I took lots of naps which helped but overall I just guted it out.

David

[iowaboy]

Oh it was a full year or better before I was back to the same level of energy,  but I tend to be driven and I was really pushing hard due to a divorce,work and fighting to keep the kids with me. When I could I took lots of naps which helped but overall I just guted it out.

David

Man you're tough! You are, or should be, an inspiration to the rest of us. You had so many simultaneous problems and managed to get through all this in one piece. Great job!

[dpetty]

Well not sure about being all that tough, I should add I was having terrible problems with my neck due to the surgery, so if I did any work that required lifting it would spasm. Then my job was downsized, problems with ex-wife, finances, begin doing contract work to make ends meet, the kids were having issues with the divorce, anyway I had my hands full.

David

[Zach]

AMN,
Thought not as young as you (I'm 49) and probably not as active, I've experienced some of your issue with just plain running out of gas. I'm 6 weeks out of surgery, (2.1 CM removed on March 9) and even though it was done endoscopically so I have had virtually no side effects, I do find I can't carry on as before. I'm not your level of athlete, but I'm active, used a treadmill and ride bikes often, and can (or could) work all day every day but more like chugging along as opposed to being a runner. Working either at the job or in the woods around the house it was nothing to go 12-16 hours or more without blinking. I also spent my entire life being bullet proof, so this has been a learning experience for sure. I've learned I need to pay attention to what my body is telling me. If I start to notice my balance getting off, or I get a headache or neckache, I need to stop what I'm doing for the day. It's been a strange adjustment for one who never had to think like that before. I do share David's problem with neck pain. I was pron eto this before surgery, but now I find it's a real focus area to avoid. I need to watch my posture, and monitor how long I do paperwork or computer work.

My course of action so far is to do as much as I can up to the point it hurts and quit. The point where I get pooped takes longer to reach every week, so I'm encouraged. I'm already back to the treadmill and bike although gently. I can split wood again but not for hours on end. Other chores seem to be no big deal as long as I don't overdo it. I've had many people tell me the time frame to be 100% back to normal can be quite lengthy after a major surgery like an AN. I keep chipping away at my weakness until it is no longer a factor. Best of luck, and don't get frustrated. This was quite a shock to the body, you may be a while seeing a full recovery.

Zach

[Russ]

Hi Amn!
  I know a person who is quite an athelete and 2+ years mid-fossa post op. They have little energy for work much beyond 20 - 25 hrs. and suffer vestibular problems. Work and athletic activity seem to require different things from people's energy reserve.
 Given this, the person at 50 something is speed skating ( ice ) at near Olympic level.
  Just listen to your body, okay Amn?  Generally AN is a life altering event in one way or another.
  Russ

[rheab]

I agree, recovery isn't as quick as I thought it would be. I'd always bounced back quickly from any surgery, but brain surgery apparently is quite different. I'm also 4 years post op, and I too have experienced some depression issues. My family doc has addressed these issues with a fairly new medication that is being prescribed for Fibromyalgia patients, and that my ENT is ok with. I'm not sure it's ethical for me to name the medication on this site. Perhaps your family doc can help you w/the depression, at least on a short term basis. Your doctor should be familiar with this medication. It is made by Eli Lilly. Best wishes. You're not alone.

[gailf]

hi amn,
i really started to feel better around 4 months post op and gradually got better. don't push yourself too much but do try to do things to keep active. your body will let you know. you have been through this twice also remember most of us haven't. it may take you a little longer.positive attitude really helps and maybe some relaxation tapes. actually you don't sound far behind where i was if any at all. i had mid fossa on a 1.8 cm. take care and keep your chin up. gail 

[amn70]

Zach and Gail and everyone else that has replied, I thank you for your input. I am now four months post-op and things have improved although I am not totally where I want to be. I hope everyone that is recovering from surgery is seeing improvements--that is what keeps me going. Pain is present every day but some days are better than others. I agree with others when they have said this has been quite a life-changing experience. The doctors too often downplay the recovery phase because their main concern was getting the tumor out. I, too, breathed a sigh of relief that my complicated surgery was a success but I wasn't truly prepared for what lay ahead. This site is truly a great place to visit. I do not feel "alone" in my journey to get back to a "new normal" as I know I will never be the same person as I was before this surgery.